tag:blogger.com,1999:blog-4117022934908081512.post2617000138799032266..comments2018-01-09T15:59:29.822-08:00Comments on Zipperheads for Chiari: What to expect when facing Arnold Chiari Malformation decompression surgery. Before and after, the good, the bad and what it just is. How to keep your sprits up and move forward afterwardsHeatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-4117022934908081512.post-67366270799717217912018-01-09T15:59:29.822-08:002018-01-09T15:59:29.822-08:00wow this is scary stuff; I just found out I have C...wow this is scary stuff; I just found out I have Chiari 1 Malformation. they said I was born with it. I am 53 yrs old. for years I have been missed dx ; I had back surgery; I had my throat stretched 4 times ; I had eye surgery, and headaches slurred speech,blurred/ double vision and memory loss; has anyone experience that memory loss, does it come back? I have so much more symptoms . And to think now another surgery and it sounds painful . I could go on and on but then I wouldn't make any since. Oh and my neck pops a lot ; what's that about. i am getting scared my surgery is 01/26/18 please pray for me . that everything comes out ok thanks for listening ; look forward to reading any comments you might have for me ; thanks for listeningAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-37390581200863955412017-09-28T22:10:24.732-07:002017-09-28T22:10:24.732-07:00I have recently been diagnosed with chiari, surger...I have recently been diagnosed with chiari, surgery is scheduled for October 24, 2017. Since diagnosed I have been on so many different sites, reading and watching numerous videos. But your words and the explanation of emotions have by far been the best information I have read this far. Thank you so much for sharing.. AngieAnonymoushttps://www.blogger.com/profile/16429285159850721779noreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-84360346919482180132017-02-07T12:45:44.716-08:002017-02-07T12:45:44.716-08:00Glad I stumbled across this...as I sit in my neuro...Glad I stumbled across this...as I sit in my neurosurgeon's office awaiting my 5.5 wks post op check-up. I had decompression surgery on 30, December, 2016. (What a way to bring in the new year).<br />Anyhow, your post is so very encouraging. Thank you for sharing and being so open & honest. So often, as patients it's easier to say, "I'm fine, or I'm okay", because we do feel such a burden to our loved ones. <br />Though I have a few improved symptoms, less tingling in my hands and feet, less pressure noted in my head....I still have a tremendous headache, at times. Not constant like it was prior to surgery. The spasms in my neck are quite bothersome at times, not really painful, more irritating then anything. Do not and I repeat do not bend over! That will put a severe pulsing in your head and also make you quite dizzy. <br />It is scary, I agree whole heartedly! Depression, yes...<br />Nauseating, yes! Embarrassing, yes! But I love the perspectives you put on this. I am learning, it is okay to ask for help. There are times that I feel I've become a burden as it's been a long nearly 6 wks for my family. <br />I'm learning not to push to hard to soon. Definitely get up and walk a bit more daily. You do have to rebuild your strength. But listen to your body. Sometimes enough is enough and that is okay. <br />I will have to come back and finish as it is my time for the doc.<br />Anonymoushttps://www.blogger.com/profile/00487384036017795930noreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-18455760087031733762016-12-31T07:33:05.434-08:002016-12-31T07:33:05.434-08:00I have been having dizziness daily since March. I ...I have been having dizziness daily since March. I have been sent to cardiology, then ENT, who sent me to neurolgy specialist. I had my MRI yesterday and it shows a 5.5mm Chiari 1 Malformation. I have not yet heard back from neurology. The dizziness was what sent me lookong for help. Now that I see the others symptoms I have realized that I have been dealing with this probably most of my life. But i just chalked my other symptoms up to stress or over exertion. I was relieved to finally have an answer, but now the fear of surgery is settling in. I have yet to hear back from the neurologist, but Im guessing that because of the symptoms they are going to recommend surgery? My cousin and my father both struggled with this. My cousin has had multiple surgeries and now says she has brain cancer. My father however was on a regimen of anti-inflammatories for a while and his symptoms have not come back. So I have seen both sides. Thank you for this information. I do believe out of all the sites i have found this one is my favorite.Anonymoushttps://www.blogger.com/profile/02538752657990172103noreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-50874695394961964992016-12-31T07:31:16.733-08:002016-12-31T07:31:16.733-08:00This comment has been removed by the author.Anonymoushttps://www.blogger.com/profile/02538752657990172103noreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-75171229594545116992016-12-22T04:10:26.860-08:002016-12-22T04:10:26.860-08:00I was recently diagnosed with a chiari malformatio...I was recently diagnosed with a chiari malformation. I'm 17 and have 1 year old twins. My daughter is actually being tested in January for the malformation. I dont know yet if i will require surgery, i wont know until January's 17th when i see a neurologist. The wait is killing me but this blog answered so many questions about the surgery, so thank you!Anonymoushttps://www.blogger.com/profile/10516426692216480451noreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-50684505426971136452016-12-21T10:03:06.027-08:002016-12-21T10:03:06.027-08:00Years after surgery, my daughter claims to require...Years after surgery, my daughter claims to require Suboxone daily for pain caused by swelling. At first I said I understood, but after speaking with an addiction specialist I was told that Suboxone is never used for pain management. Have you ever heard of this?<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-49966372785637000212016-05-27T14:51:09.121-07:002016-05-27T14:51:09.121-07:00Hope you still check this...my surgery is in 5 day...Hope you still check this...my surgery is in 5 days and I'm so happy to have come across what you shared. I don't know about the blog things so wouldn't be able to find it again if I tried so...Your words have struck a cord in me and want you to know how much I appreciate what that has done. I am going to do me and at 53 it's about damn time so thank you!!Rhondahttps://www.blogger.com/profile/06350519635338895776noreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-31047427484273147332014-06-30T17:09:09.721-07:002014-06-30T17:09:09.721-07:00I had my decompression March 23. I had lost my ab...I had my decompression March 23. I had lost my ability to swallow, extreme head pain, loss of vision in left eye, loss of hearing on left side. I had basically no sensation on left side. I suffered with terrible cognitive and memory loss pror to surgery. The procedure lasted 5/12 hours. I had chemical meningitis which was excruciating. I am doing much better,but the depression I am experiencing is pulling me down more and more everyday. I am 54 yrs old and I am so ready to feel better. Anyone have some words of wisdom fo me...I would really appreciate any advice.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-79301038539309678802014-04-14T09:57:55.857-07:002014-04-14T09:57:55.857-07:00I had my surgery June of 2004.I can't work any...I had my surgery June of 2004.I can't work anymore and have health problems I never had before.pereferal neuropathy which is a huge amount of pain especially in my legs and fibromialgia all over and still have constant headache ass'd pain on surgery site! It had changed my life completely.major depression! But I look at it this way..even though everyday is painful and a struggle I'm still breathing and this is the hand I've been dealt and God has his reason and he will never give you anything you can't handle! There are far worse of people out there than me and if they can be positive and live a happy life so can I.never give up always keep pushing through. You have bad days and good days even after 10 years just keep a smile on your face even if you have to make yourself at first your find later you doing it and its easier than forcing it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-1336690788087265462014-04-13T20:41:59.065-07:002014-04-13T20:41:59.065-07:00Thank you :) <3Thank you :) <3Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-17727719769142524152014-04-08T11:09:13.335-07:002014-04-08T11:09:13.335-07:00Thanks so very much for your thoughts and the wond...Thanks so very much for your thoughts and the wonderful thoughts of others here. I am 3 weeks out from my chiari decompression surgery and I am improving, but it is better to look at it week by week as some days are better than others. MOST IMPORTANT THAT MY DR. HAS BEEN ABSOLUTELY RIGHT ABOUT IS RESTING COMPLETELY FLAT. I find that when I cheat on this that this is where I get the worst pain. For 48 hrs after the surgery I payed flat in the hospital, then gradually I was raised 10 degrees per hour, this helped with the nausea and I was out of hospital in 4 days. Best of luck to all considering this, it is important to not live that way, it does get better. My amazing wife, is such a tremendous reason for this! You need to be challenged and you need no understand that you will be moody and irrational at times during and especially after the procedure. If any one has questions, I hope to be able to help... David.David-the-zipper-headhttps://www.blogger.com/profile/08365674687350077673noreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-31112316403563614642014-01-25T18:08:32.429-08:002014-01-25T18:08:32.429-08:00I was diagnosed in March 2013 after an auto accide...I was diagnosed in March 2013 after an auto accident. I always felt this way and thought it was something I just had to live with. But the headaches are so bad, that I am ready to cut my head off. Found a surgeon that will do the surgery, when I'm ready. The pain has gotten so bad that I think I'm ready to go through with this. Rally scared of what life will be afterwards. After reading your comments, I feel a little better about doing this. God Bless BrendaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-17890828689843208342013-08-29T02:13:20.097-07:002013-08-29T02:13:20.097-07:00I had the decompression surgery a week ago today. ...I had the decompression surgery a week ago today. It's haft and it sucks and it hurts, but it was something that needed to be done. I spent 7 months in constant pain as they decided what was wrong with me. In a 3 month period my borderline Chiari went from 4 mm to 6.2 mm which isn't very bad at all but the syrinx went from a small bulge at c5-c7 to a thick constant progression from c2-t3. I brushed off the small neuro signs as other things. Numbness in my hands was positional, walking too close and bumping into doors was just me not paying attention, occasionally stumbling over my feet was from wearing different shoes but it wasn't until the equallibrium problems and the vision changes that anyone took me seriously. I had one doctor that told me he didn't believe that what he saw on the MRI was causing me pain and that some people had unexplained headaches and that I needed to find a way to live with it. He suggested acupuncture.they thought they saw papaladema in my eye so they wanted to do a shunt. The problem with my diagnosis was they didn't understand WHY I had an aquired Chiari and didn't want to do anything until they knew. They finally decided that they may never know and they did the surgery. So here I am a week out. I spent 4 days in ICU and 2 days in a regular room. I could walk at day 3 and they are surprised and happy that I'm progressing so well. I'm pushing myself. I have goals set along my path and I will strive to meet them. My advise is this...learn what you are SUPPOSED to feel after surgery. A whooshing in your ears or dizziness or drowsiness or pain or numbness. Learn what is ok and not ok symptomaticly. Them do what they say. You need to set up and do a few things. So why not in a wheel chair in your favorite store for 15 min. Ask your doctor first. But set little goals. Even if its to be able to go to the bathroom unassisted with the door closed and someone in the hall just in case. The first shower will be the BEST shower you EVER have. Don't touch your bandage or let others touch it. Infection is a big deal in this part of your body. Rest when your body says rest. And most of all try to remember your sense of humor. You are going to have to go through some humiliating things like when someone has to help you onto the bedside toilet or to bathe. Just go with it. It has to be done so don't be humiliated just try to accept it and try to find something to laugh about. Of course don't laugh too hard as this still hurts to do at the moment. To all of you that have had surgery before me, thanks for your posts and encouragement and for letting me know I wasn't alone. For those of you that are to come my thoughts and prayers are with each and every one of you and just know that you are not alone.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-38742929227496578852013-08-16T06:57:25.726-07:002013-08-16T06:57:25.726-07:00Hi, it's late and I came across your site. I a...Hi, it's late and I came across your site. I am very scared making this decision for our daughter. Who is 7. Her herniation is 15 mm. She has verbal dyspraxia and epilepsy. We are confident in Neurosurgeons at hospital and we only found out in May. She's bright and has a beautiful brain. Has many overlapping symptoms. As days draw nearer 4 days to be exact. I am stressing that I can't keep it together. I hope I find strength. Is Chiari causing these other conditions? We dont know?<br /> I feel for what you have gone through with you and yours. Gosh I can't imagine! Best wishes to you from here in Australia. Thank you for putting time in to words for others to read! Miss MelAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-53873233246783583752013-07-29T20:11:24.883-07:002013-07-29T20:11:24.883-07:00Thank you for your in put. I am in recovery from t...Thank you for your in put. I am in recovery from the decompression surgery that I had on June 13th. I often feel that the people around me are not understanding me and my healing process. They often complain that I am so tired and sleep most of some days. But I know that I am healing. It is just hard for others to understand that I am not just magically better after the surgery. It takes time and I know that. It is nice to hear that there are people out there who understand.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-80013968481079160302013-07-27T03:54:04.893-07:002013-07-27T03:54:04.893-07:00Thank you for these most informative and encouragi...Thank you for these most informative and encouraging words<br />...especially on how to support the special people that support the patient. My loved ones have their own fears and guilt etc., and I want to make sure they are OK when I go for my surgery soon. May you continue to heal.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-12122757918636162712013-06-02T07:32:03.411-07:002013-06-02T07:32:03.411-07:00It was nice to read your very honest account in du...It was nice to read your very honest account in due to have the chiari decompression surgery on the 14th August I have a 7mm herniation plus a thoracic syrinx which meant I had no options I have to have the surgery. I've lived my life being told I'm pretending or that I'm hoping to be ill it was found by accident but explains a lot of the things I've been going through. Hopefully my op will go well I have one of the best neurosurgeons in the uk and he seems confident. <br /><br />All the best for the future <br /><br />Kim xAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-10410179038700437722013-05-28T04:17:36.098-07:002013-05-28T04:17:36.098-07:00Thanks for sharing your story. It is so encouragi...Thanks for sharing your story. It is so encouraging to see survivors be positive! It helps so much to know we're not alone in all of this.Nancyehttps://www.blogger.com/profile/00792072139832368161noreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-60499171002808511882013-05-12T14:53:49.454-07:002013-05-12T14:53:49.454-07:00Thank you..This really helps. Found out Wed..surge...Thank you..This really helps. Found out Wed..surgery consult Monday. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-42693554089055735462013-01-09T17:48:32.884-08:002013-01-09T17:48:32.884-08:00Thanks for your comments, it makes me feel a littl...Thanks for your comments, it makes me feel a little better on what to expect. I have not made the decision on surgery but it's starting to look like I may not have a choice.<br />Anonymousnoreply@blogger.com